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Are there different degrees of sclero?


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#1 PHYLLIS.G

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Posted 01 May 2008 - 04:01 AM

Thank you all who responded to my "1st time dealing" with sclero. Your courage gives me hope and your words comfort. My "doctor" /intern at M.U.S.C. told me that after being diagnosed with sclero that if after several years of having it and the disease doesn't get any worse, chances are it won't. Could this be true??!!!

Thanks,

Philly

#2 omaeva

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Posted 01 May 2008 - 05:39 AM

Well there are different ones. Diffuse, Limited, Linear just peek around on this site.

But from my own experience, I get new symptoms as the years progress.

#3 CraigR

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Posted 01 May 2008 - 09:35 AM

One of the main lessons I learned from getting together with the local sclero meeting was that almost every case is different.

Mine is CREST without the "E", but with Sjogren's and lung complications, after 31 years. Never had heartburn in my life!

Craig

#4 truman

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Posted 01 May 2008 - 09:55 AM

Phyllis:

My rheumatologist told me that also. I've had it for the last 17 years now with no real obvious signs other than Raynauds, reflux, the cute little red spots. When I started to cry at the second diagnosis, the rheumatologist said at my age, if this is all I've experienced so far, chances are this is as slow as the progression will ever be. She said I could be well into my 80's without any real difficulty. Yes, things did happen in the interim, but mostly due to office AC climate and my ignorance.

Linda
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It is what it is...........

#5 peanut

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Posted 01 May 2008 - 11:27 AM

Yup everyone is different and the rates of progression vary.
Then, Sclero can go into randomly go into remission, go inactive, active...
Just to make us crazy.

peanut

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my HMO makes me wear a helmet...

#6 Gidget

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Posted 01 May 2008 - 01:02 PM

For systemic sclero, the disease is the most active on average for 36 months. On average, after 36 months the disease peters itself out and you are left with what you are left with for the most part. Again, these are averages. As such, it is important to treat the disease as agressively as possible in its initial stages in order to shorten the bell curve or peak from the 36 months to say 24 months as chances are you will be left with better lung function, etc.. if the active period is shortened. Once you are through the active phase, there is some possibility that skin scores will improve for some people. I don't know what the life cycle is for limited. Gidget

#7 YFChoice

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Posted 01 May 2008 - 04:03 PM

I would have to disagree on the 36 month average statement. Even on a broad average curve, each case is so different, that, a timeline actually shouldn't be used. It tends to create restrictions (whether real or not) that sometimes limit a person's progress. I've met so many scleroderma people over the past 26 years (from having been involved with various scleroderma organizations) that I've noticed that people can actually go into depression mode from any negative restriction or setback. I've seen people panic if one of the numbers on a bloodwork test does not test within normal parameters. My old rheumatologist. doctor used to not tell about side effects of some meds......he said lots of times patients would develop those side effects if they knew about them. He preferred to have his patients tell him if anything different was going on when taking a med.

Sorry to ramble, but I think a positive attitude with as few hurdles to jump as possible is very very important. I could not tell you the numbers on any of my bloodwork. To me, those numbers don't decide how I'll cope. Likewise, I don't want to know if I've passed the 36 month active stage or if I have another month to go..........I just take it day to day. My worst scleroderma years were the first 5 (1983-88) and then again from 2000-2002. Even now, while some symptoms are on an even keel, others are flaring up like they mean business.

Peanut hit it squarely on the head what this disease is like.
~ You have to think anyway.....you might as well think big

#8 janey

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Posted 01 May 2008 - 05:27 PM

In looking through the research on this site and others, it is definitely the concensus of this discussion that this disease is different for everyone and everyone responds differently to it. However, those with diffuse scleroderma can have a faster progression during the first 2 - 5 years. In support of Gidget's statement of 36 months, I found the following statement on MedicineNet.com - Prognosis.

"Recent data indicates that the critical period of organ risk is generally within the first three years of skin involvement. This means that patients can be reassured that their risk of organ-threatening complications is significantly less after three years of having skin symptoms." (reference from 2003)

On the University of Maryland Medical Center page on Scleroderma - Prognosis it states

"Localized scleroderma nearly always carries a good prognosis and a normal life span.
Limited scleroderma can usually expect normal lifespan if the disease affects only the hands and face. The course of this type still tends to be slowly progressive and, in some cases, may affect internal organs....
Diffuse Scleroderma: The severity of diffuse scleroderma varies widely, and it is very difficult to predict its course....The most critical period for rapid progression is usually within the first 2 - 5 years of the start of the disease."
(2008)

You can get even more information from our "What is Scleroderma?" page.

Excellent question Phyllis! Unfortunately, way too many variables for a definitive answer. As far as for me - I'm in year 5 and things are FINALLY starting to settle down. Lots and lots of problems during year one many of which went into remission in year two, heart problems developed in 2 and 3 and are hopefully getting it all under control now, lung problems developed in year 3 but are currently stable. Skin involvement only during the first 6 months and then softened during the next 6 months. (nothing past the wrist)

Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
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International Scleroderma Network (ISN)

#9 debonair susie

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Posted 02 May 2008 - 07:28 AM

I got alot of the same information as tru.

It was decided that I have CREST... actually the 'REST' of CREST... no calcinosis, to date and I was diagnosed in 1995. Also decided: Limited

I have esophageal involvement, as well as gastrointestinal issues. The skin was greatly involved... for 8 years, but has improved.
As I noted in an earlier post, the pain I've suffered with for years.... has let up, for which I am grateful.... I attribute this to no flare, at the present time.
At my rheumatologist app't earlier this week, I apparently porvoked some curiosity, so she is going to resurrect some old files on my earlier years and the symptoms/signs I was displaying then.
I'm sure it will take some time, so I expect it will be later rather than sooner... when she lets me know of her findings.

Hugs,
Susie
Special Hugs,

Susie Kraft
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International Scleroderma Network (ISN)

#10 Karenlee

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Posted 03 May 2008 - 01:51 AM

Interesting point I wanted to bring up regarding remission.
I saw my Rhumetologist last week for a follow up. I explained to him that hubby and I are considering going thru with the in-vitro process, and asked if I would have to come off of the Plaquenil, which I was concerned about since I've only been on 3 weeks and it hasnt been long enough to receive any benefits from it. He told me that I can stay on during the process, but when/if I do get pregnant that the disease will go into remission for the duration of the pregnancy. Interesting to say the least. I'd stay permanently pregnant if I could. Lol

Karen

#11 Peggy

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Posted 03 May 2008 - 04:35 AM

Ok this might be a dumb question but I have systemic sclero so is that diffuse or limited???? I have skin involvement on my arms, chest, legs, and face and my rheumatologist doctor says the numbers that they go by that mine are off the charts. I also have gastro problems and some lung involvement. I also have sjogren's, raynauds, and polymyositis. So which am I?


Warm hugs,

Peggy

#12 truman

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Posted 03 May 2008 - 07:48 AM

You're too funny Karen :lol:

Great deal if it's true though.
Tru

It is what it is...........

#13 Snowbird

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Posted 03 May 2008 - 05:06 PM

Peggy

I understand that Systemic Scleroderma can be either Limited or Diffuse because they can both affect a person internally and externally...it's just that Limited means it is slower, so it progresses slowly over time where Diffuse means it quicker, so it's much faster in onset.

Correct me if I'm wrong anyone.
Sending good wishes your way!

#14 CraigR

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Posted 05 May 2008 - 07:08 AM

I agree with Snowbird. Those who I've met with diffuse generally begin feeling quite ill, with quick progression to skin involvement.

I have limited which started out as Raynauds with a single finger ulcer (age 22). So for about the first twenty years, it was mainly a matter of keeping my hands warm.

About age 41, I took up swimming and noticed that, even after several months of training, I had to stop periodically for breath, while people in much worse shape kept swimming. I also noticed this effect when hiking. I never would have noticed the problem, had I not been exercising vigorously. (It took years to get a decent diagnosis - but that's another story).

A little later I developed Sjogren's, which was mainly manifested by dry mouth, especially when breathing hard.

I guess my point is just how slow and insidious the limited kind can be - in contrast with the diffuse form, perhaps. My father also had limited scleroderma, and wasn't diagnosed until he was in his fifties, and that because of kidney failure. As children we were told that my father had cold hands because he smoked, and indigestion because of a hiatal hernia.

Craig

#15 summer

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Posted 05 May 2008 - 11:38 PM

I was diagnosed with Limited/Crest Scleroderma just over 12 months ago.
I have no skin issues as yet, but everything internal has been happening.
I have Gastritis of the stomach, esophagitis , Tachycardia, Raynauds started about 8 months ago, I have been told I have either PH or ILD as my DLCO levels were above normal one year ago and are now below normal and are still falling.
I have pain on both sides of my kidneys which is excrutiating, all of my blood and urine tests are normal. The doctors don't know why I am in such pain, fatigue and stiffness in joints are terrible. I also have been told that my Achilles tendon in one foot is now not in the correct position due to stiffness/sorness from the Scleroderma, which is now causing everthing from my knee down to be out of place.

One year ago I was active and pain free, now I am constantly fatigued and in pain and can only hobble like an old lady.

As you can see everyone is different with this disease, I have positive ANA and anti-centromere antibodies.

Take care
Celia

#16 Karenlee

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Posted 06 May 2008 - 02:09 AM

This is a hard question for me to answer but I'll give it my best try.
At 18-19 my hair fell out. I had super dry skin and gained a ton of weight (I really didn't eat that much). Tired all the time and constipated. Started having the absolute worst panick attacks, I mean to the point where I couldn't leave my appartment and lost 10 lbs from vomiting out of sheer fear and terror. I was tested for my thyroid a few times which came back "normal" so I just figured it was what it was and blamed it on bad genetics. Finally in my late 20's I was tested again for my thyroid which was way low. Started meds for that and stayed pretty much stable for about 8 years or so. About 3-4 years ago the Raynauds started. That was around the time my mom got ill and had triple bypass (was home taking care of her and working full time). Then my Dad was diagnosed with Alzheimers and Parkinsons. (theres a point I'm getting to with this). While he was ill I did notice the inflamation and red speckles on my face but wasn't really focused on myself at the time. Didn't have the time to actually. My point is, I do think that this disease can be exaserbated (sp?) by stress if you are pre disposed to it. When my dad passed away it really took a toll on me. I was urged to see a rhumetologist/dermatologist which I put off for about a year when I was finally diagnosed with CREST variant without the C and UCTD. I do have some skin involvement, but all tests so far show no internal involvement.
Sorry for such a long blather but these are the peices of the puzzle that are just starting to come together to make a picture. In theory I've been dealing with autoimmune issues since my teens and I am now (gasp) 41.

Karen

#17 jaateach

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Posted 06 May 2008 - 06:12 AM

My rheumatologist described sclero this way: it is sort of like a glacier moving through. it is at it worst during onset and then as the glacier passes through one is left with the features that is left behind. generally one does not need to worry about new symptoms. this of course is VERY general. it does seem to match with my own story.

joe

#18 CraigR

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Posted 07 May 2008 - 08:42 AM

Joe's glacier analogy may ring very true for the diffuse form, however the limited systemic form can be very slow and insidious, with earliest symptoms minor enough to ignore or deny.

Craig